Browse Items (147 total)

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment,…

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

BACKGROUND: Lung involvement in children with Niemann-Pick disease has rarely been studied systematically. OBJECTIVE: To assess the involvement of the lung and the value of bronchoalveolar lavage in children with Niemann-Pick diseases. DESIGN:…

BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…

BACKGROUND: Recognizing transitions in end of life care for children is difficult and hinders communication and care planning. AIM: To identify the signs and symptoms that are most useful in signalling which children may have end of life care needs.…

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

A 15-year-old girl with combined immune deficiency syndrome, diagnosed with metastatic squamous cell cancer of the anus, had significant pain secondary to vulvar-perianal condyloma. Conventional treatment with oral and intravenous analgesics was…

Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…

BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has…

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are…

Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to…

OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…

Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…
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